Recently I gave a second nickname to my DH (dear husband!), which is BUB, or Back up Brain and we find this terminology far easier to live with than carer. We think of a back up brain as being the same as the hard drive in a computer. He said recently, it empowers him to be by my side and with me, rather than to ‘care’ for me, a very subtle but significant difference. The Scottish Dementia Working Group have a slogan, nothing about me without me. And so it is with my dear husband, who helps me live more fully with the symptoms of dementia. We have learned together to live with dementia, in ways that don’t inhibit or restrict me as a person, and in ways that help to keep our love alive, way above the daily changes and traumas that can also be the living with dementia. He does not take away my dignity and power to do things for myself, but instead assists me from the sidelines, there when I ask for help, or offering help if he sees me stumbling. Offering is also a key word here, as he does not enforce his opinions or help, but rather acts as my back up brain, my hard drive, the one that is fading, but with effort, and sometimes assistance, can still function well. It also empowers me to feel less of a failure, and less guilty about what is happening (failure, only in the sense of having to accept there are so many things I simply cannot do alone anymore). I am the only one on this [my] train [person with dementia] who knows what is going on in my mind. Your imagination is far worse than anything you can actually tell, and your interpretation of what you think is best for me is simply that – your interpretation. I read a lot and come across what was happening [to me] through text books and online articles and blogs. It is almost exclusively the words of those others with dementia that really ring true.
The words of carers, whilst sometimes encouraging to read, usually empower other carers, but rarely have the power to tell me what it is like for me. They do however, help me understand more fully the evolving role of my husband and children, and for now allow me to be less stressed and less dogmatic about my own needs. It is important I understand their world as much as possible, as it is part of my own. My dear husband is working on a presentation for Alzheimer’s New Zealand conference that I dobbed him in for (!), and I suspect he will discuss more his role of back up brain vs carer. It will be interesting for us to work together on this topic, just like our relationship has been from day one, both sides of the same coin. My husband wrote, I am a person living with a person living with dementia. With emphasis on the word LIVING. Some people try to categorise me as a carer/martyr and Kate as a victim. I do not see myself as a carer. I cared for Kate well before she was diagnosed with dementia. I do not feel like a victim and my dear husband does not feel like a martyr in his role as my back up brain and partner. My son wrote, If you want their brain to stop working then help them stop using it. My family is very wise, and love me, and help me, in ways that do not minimise me. They have become my back up brain, the hard drive there for me only when I crash or stumble, gently watching from the sidelines. Occasionally we all stumble in our new roles, and get it wrong. Sometimes I expect too much. Sometimes they try to assist too much. It is a very fine line, not black and white, and getting more grey by the day. Mostly, we get on with living, and loving and laughing as often as we can.